Author Mira Bartok was scheduled to talk to Terri Gross on Fresh Air this past Monday, but because of the attempted assassination of Congressman Giffords, the program focused on Arizona gun laws. Fresh Air featured Bartok and her memoir, The Memory Palace on Tuesday. The irony of the shift is not lost on Bartok, who suffers from Traumatic Brain Injury (TBI). The artist and writer was hit by a tractor-trailer in 1999. The accident happened nine months after she got a concussion slipping on black ice, which left her brain vulnerable to future wounds. Recovery from TBI is lengthy, and often incomplete, leaving people with fatigue, confusion about daily tasks, and memory problems. TBI is among those invisible disabilities with which people are perceived as functional because they present as such. This is frustrating for all involved, including the patient who assumes she should be better. Bartok herself needed time to learn that she was changed. While she received treatment for some physical injuries form the accident, her longterm cognitive problems were not immediately identified. She couldn’t do the things she used to do, like teach art, or draw while listening to music. Eventually, her TBI was diagnosed and she began working with cognitive therapists to develop strategies to handle the new ways her brain works. Bartok describes her old self as having boundless energy and a sociable nature. She could make art while listening to music and help people when she wasn’t working on her own projects. Now she has to protect herself. Grocery shopping can be impossible because of the lights and the choices. Having dinner in a restaurant with friends might be more sensory input than she can bear, and leave her unable to work on writing or art projects the next day. These problems are hard to see. I met Mira Bartok at a writers’ conference in 2009. She was part of a panel on brain injury, and spoke eloquently about her struggles to rebuild her writing life. Even from a podium, her warmth and wit are apparent. She’s the kind of person you want to get to know. When I had the opportunity to interview her for a disability rights newspaper, I fantasized that we might meet at an art museum so I could observe her observing the art. “In your dreams, Amy!” she laughed. Such an excursion was out of the question because it would involve driving, and focusing on our conversation in an uncontrolled environment. The day we spoke on the phone, she had no plans to write. Even the phone interview, she said, was draining. Bartok keeps a memory table in her studio to remind herself of what she’s doing and what she’s done. While writing her memoir, she built a cabinet with a slot for every chapter, and filled it with notes and writing on the topic. The cabinet is cleared now, ready for her next project, an illustrated young adult novel. “Above my desk are lists of things I can’t remember anymore, the meaning of words I used to know, ideas I’ll forget within an hour or a day. My computer is covered in Post-its, reminding me of which books I lent out to whom, memories I’m afraid I’ll forget, songs from the past I suddenly recall,” she writes in The Memory Palace. The workings of the mind and the creative process are ripe subjects for memoir, and Bartok’s is not the only book written from a TBI informed point of view. Floyd Skloot, father of Rebecca Skloot of The Immortal Life of Henrietta Lacks fame and author in his own right, caught a virus on a plane that attacked his brain. The poet, marathon runner, and civil servant – Skloot worked for the Illinois Bureau of the Budget – was forced to stop and change completely. His book, In the Shadow of Memory is a tour of the virus, his childhood, and the way he reassembled a sense of self. He followed this with The Wink of the Zenith: The Shaping of a Writer's Life, a map of how he became a writer, and how he became a writer again, after his illness. Skloot’s persona on the page is very human and endearing, worth reading whether you are trying to figure out how to be a writer, or just trying to figure out how to be alive. My interest in brain injury and writing is personal. My father’s first set of strokes didn’t hit his writing center, and he elegantly described his rehabilitation in a newspaper column. When, two years later, he had another series of strokes, he lost the ability to write. He used to be able to weave together nostalgic storytelling and current events and to sculpt his rage into thoughtful arguments on the op-ed pages of local papers. My desire to help my father drew me to that panel where I met Mira Bartok. I took home hints from Linda Hogan and Allison Hedge Coke, other writers who learned to live and write in the wake of brain trouble. I left the room inspired by the way poet Peggy Shumaker’s husband helped her heal and rebuild her ability to write. The Alaska State Writer Laureate, Shumaker was riding her bicycle when a kid on a four-wheeler crossed into the designated bike path and almost killed her. Just Breathe Normally is her memoir in poems, and the poems span her childhood through her recovery. The book marks her path from being unable to read to being able to write again, and from anger to forgiveness for the person who hurt her. I took what I heard from these authors, and tried to bring it home to my father. I told him about the steady application of self to task, and the slow progress that these writers made. I talked with him about stories he wanted to write, and helped flesh out some ideas. His productivity has diminished since his last strokes, but he keeps at it, and the newspapers occasionally run what he writes. I thought of him for another reason as I read The Memory Palace. The illustrated memoir unfolds the details of Bartok’s mother’s schizophrenia, and begs the question of what we owe our parents. Bartok’s mother, Norma Kurap Herr, was a gifted pianist who slid into mental illness early in her daughters’ lives. Eventually, the two sisters changed their names and got unlisted phone numbers to insulate themselves from their mother’s paranoid intrusions. She wasn’t just suggesting what they wear, but visiting their jobs and threatening their employment, and making harassing phone calls that could number a hundred a day. After Mira and Natalia’s attempts to help their mother dramatically failed, Norma was homeless for nearly twenty years. During that time, Bartok corresponded with her mother, using a post office box. At the end of her life, a social worker stitched the family together with a phone call, and Mira, Natalia and Norma have a hospital reunion. We cannot save our parents. They gave us life, and we struggle as adults with how to give them their due. In Bartok’s case, she had to funnel her care and love for her mother into a letter driven relationship. As I struggle with how to help my father and mother navigate this revision of their lives, I am grateful to the writers who share their stories, which are maps, to help us all.
Don’t read this book in bed unless you want to stay up past your bedtime thrilled by the discovery of a new writer. The collection of linked stories lasted me a week only because I loved the writing so much that I forced myself to close the book after each story and savor the experience of being enveloped by one of Steven Amsterdam’s thorough realms. The book begins mildly, describing New Year’s Eve through a boy’s eyes as his father panics about Y2K. On the verge of adolescence, the narrator draws the reader into the tensions of his teetering personal world, and the world that teeters beyond. He hits all the right notes of ambivalence and alignment as he carries the reader through his struggle to stay with his mother and grandparents, who believe nothing will change at midnight, or be with his father, who is sure everything will. I thought the rest of the stories would be similarly realistic, peppered with landmark events I might recognize from the last decade. If I had paid attention to the title or the jacket flap, I might have had a clue, but I am happy to have been caught in a surprise. Things We Didn’t See Coming follows the growing boy through an unraveled world. The uncertain social terrain of an ever-revising dystopia is revealed, and we get an intimate view of the narrator’s thoughts, feelings and loyalties as he matures. The details of this place – necessary pills, strict division of rural and urban resources and spaces – and the just-beyond-now feeling of the scenarios are intriguing. In one story, the boy and his grandparents escape the city. In the next, he is older and on his own, clearing people out of suburban and vacation homes to make way for grazing livestock. The stories are compelling in terms of content, but the strong writing pulled my interest far beyond the subject’s what-if appeal. The entire collection, which was marketed as a novel in Australia, is told in the first person, present tense. While this is risky in terms of holding a reader too close for too long, the intimacy is off-hand because of the main character’s casual tone, and interrupted by spot-on dialogue. The voice delivers scenes in a conversational patter that is at once deftly easy on the reader and completely engaging. The author fleshes out environments without overburdening the reader with a museum catalog of elements, as in this stage setting sentence from “Dry Land.” “Inside, the place is all fake-rustic, patchwork quilts on the walls everywhere, a family of black skillets hanging over the kitchen counter, and the thousand-dollar appliances you can’t use since the grid went down.” Amsterdam writes paragraphs that are paintings of problems, like this report of a celebrity who is, at the time, the man’s employer. “Her goal, she says, is to connect the coasts and the north-south borders with great corridors of wild land – farms, forests, suburbs reclaimed by nature. One day there will be no more cities – their shells will be ghostly interruptions of the new nation, which will be composed of rural communities linked in all directions.” Things We Didn’t See Coming is full of intensely imagined moments that smack of the human real. In a story called “The Profit Motive,” the narrator is tested to see if he is fit to join a provisional government set to correct the mayhem that has reined. We experience the sweaty discomfort of a situation where emotions matter only to the broader goal of survival. We learn that he is “too old for theft,” and in this well-tossed phrase, glimpse with him back at his life. The final story stitches the beginning to the end as the narrator visits his father. “The Best Medicine” describes a potential future while pointing a finger at problems that are happening right now. The tradition of exploring and reveling in the idiosyncrasies of human behavior in otherworldly realms is long. This narrative habit works because the storyteller holds the mirror slightly askew, and we get to see all of our parts, good and bad. Amsterdam is an American who lives in Australia, and perhaps this displacement allows him a sweeping perspective on the whole business of being a person at the beginning of the 21st century. The truths he shows in this mirror appealed wildly to Australian audiences last year, when a new small press first published it. Things We Didn’t See Coming has been through multiple printings there, and won big literary awards on that continent. Its recent release, here, in February, is echoing the acclaim. I hope the book snowballs through his homeland and inspires him to create another stunning read.
I am in love with fairy tales and the mirrors they hold to everyday life. This is not escapism, but a preference to view brutal truths slightly disguised, in a world just the other side of this one. But even if you are married to verite-style fiction, and even if haven’t touched a fairy tale since your parents quit reading to you, you should grab There Once Lived A Woman Who Tried to Kill Her Neighbor’s Baby by Ludmilla Petrushevskaya. Petrushevskaya is a living, prolific, and now honored Russian writer. Theater provided an audience for her work when she couldn’t get her fiction into print, but by now she has become a champion of Russian letters, winning awards and receiving a nationwide birthday party when she turned seventy. The early work that threatened Soviet officials was realistic in nature, according to the introduction by her translators, Keith Gessen and Anna Summers, who also write, “Her stories about the lives of Russian women were too dark, too direct, and too forbidding.” There Once Lived A Woman Who Tried to Kill Her Neighbor’s Baby is subtitled “Scary Fairy Tales,” and some readers may find the stories dark and forbidding, if indirect. The fairy tales don’t bury the raw hardships of daily life that Petrushevskaya observed growing up in Moscow after WWII and throughout her life. Rather, the circumstances facing real people are the situations her characters also face, though slightly skewed. Sons are drafted and parents go to extremes to try to save their boys from service. Families divided by the military struggle to reunite. However, these facts reach the reader in dream-like forms, through post-apocalyptic landscapes that still bear recognizable emblems of Soviet life: close apartments, shared kitchens, and a simple hunger that is both literal and symbolic and drives people desperate for survival. Petrushevskaya delivers these tales in simple sentences piled one on top of the other like a sturdy wall of concrete blocks. “Early in the war in Moscow there lived a woman named Lida. Her husband was a pilot, and she didn’t love him very much, but they got along well enough,” opens “Incident at Sokolniki.” “There once lived a woman whose son hanged himself,” begins “The Miracle,” and what follows is not really a miracle, but a seeking of such from a near-dead drunk who trades favors for vodka. “There once lived a woman who hated her neighbor – a single mother with a small child.” This is the first line of “Revenge,” the story that suggests the book’s title and draws portraits of two lonely women and the way their lives once feathered together, and how their friendship fell apart. The horror of the title, which never actually occurs in any story in the collection, is terrific and contributes suspense to the grim action reported. If these stories are gray, blocky walls, the images, poetry and metaphor within them are beautiful, fluid cement that binds them. Shadows of ghosts hover around murderers. Characters break from tension and the ground shifts from the land of the living to the land of the dead, or from home to America. People trade money to bring their loved ones back to life. In some of the stories, the bribes work. When people write about Ludmilla Petrushevskaya, they remark on the hope that clusters around the bleak stories. I am not so certain I read hope in these pages but there is redemption within them, something that keeps the fantastical and mystical events that do not often end happily from seeming ripe with despair. For me, maybe it is just the act of storytelling that is redemptive. Someone lived to tell the tale.
Understanding how people live with disabilities has engaged me since my father had a stroke. I grew curious about the gap between me and my father, and my father and his old self. I began exploring this gap through writing essays for a disability rights newspaper about my father’s, and my family’s experiences. I had the chance to snuggle close to another physical change when my husband had a bad work accident and almost lost his hand. I wrote about that until I felt my words were too invasive, and asked my editor for other assignments. He suggested I interview people, and I’ve had the chance to profile a number of people with brain injuries, an English teacher with MS, and a blind man who climbed Kilimanjaro and kayaked the English Channel. This month my assignment is to write about a deaf drummer, Dame Evelyn Glennie. Reading is another way I try to bridge the human canyon between my temporarily able-bodied self and this broadly defined other. I’m not well-versed in the growing field of disability literature, but I am growing familiar with pockets of writers who tackle the subject of their disabilities. Poet Peggy Shumaker wrote a captivating and lyrical memoir, Just Breathe Normally that touches on moments from a nearly fatal bicycle accident and the slow process of recovering her physical and mental functions, including the very act of writing. I fell for Anne Finger’s flat, frank self-examination when I read Elegy for a Disease: A Personal and Cultural History of Polio. Her assessment of her life with a disease, and the life of that disease, written in a very immediate present tense, brought me right into her experiences. This same quick personal style grabbed me at the beginning of Anne Finger’s collection of short stories, Call Me Ahab. Her fifth title and the winner of the Prairie Schooner Book Prize in fiction, the book imagines disability in the lives of many real and literary figures. As readers we know of Helen Keller from her teacher’s perspective, of Captain Ahab’s monomania from Ishmael. Finger serves these stories, and those of other disability icons, from the eye of the beholder, confronting ideas we are spoon-fed as a culture, that Frida Kahlo is sexy, but Helen Keller is a tamed animal. Finger is a talented storyteller, delivering voices and situations with smooth conviction. The scenes she creates jump time and place without jarring the reader. An imagined Vincent Van Gogh, the lead character in “Vincent” traipses between Van Gogh’s lifetime and a modern New York City, where the painter’s brother Theo leaves him to the whims of the social services system. “Goliath” recasts the biblical tale of David and Goliath in a post-apocalyptic manner, dotted with habits and phrases from our present; a renewed medievalism carries its own odd language and realm, peppered with remnants of our destroyed civilization, like announcements of the weather mixed with ancient habits of studying dead animals to understand a person’s disease. Vincent’s mental illness and Goliath’s gigantism are central to these stories but also incidental; the disabilities sit in the stories as elements that render and support each fiction’s emotional truth. The author is intent on carefully inhabiting her characters. Thus we get to speculate what Goliath might physically feel, and wonder how an artistic genius might have weathered a society with a hostile approach to the package of his person, deficits and gifts. Graceful sentences, often with awkward or shocking subjects, flow throughout the book, such as this thought the narrator places in Helen Keller’s mind in the first story, “Helen and Frida.” Her ardent young circle of socialists wants to do away with the sordid marketplace of prostitution – bourgeois marriage – where women barter their hymens and throw in their souls to sweeten the deal. Later in the same story the narrator states, “When I was a kid I thought being a grown up would be like living in the movies…” The placement of such a universal line in the mouth of someone who deconstructs representations of people who use wheelchairs or are blind takes this story about identity politics and puts the question of identity, which is very much on the tip of the narrator’s tongue, into the reader’s lap. While elements of some of the stories feel slightly obvious and forced, like the member of a Boston Brahmin family dying of AIDS, and Ahab waxing homosexual in his thoughts, these flaws do not reduce the weight and charm of the collection. Writers manufacture stories, and some parts of even the most deftly written stories will feel manufactured. On the balance, Finger has strength in her storytelling, and hopefully that strength will reach a wide audience.